It’s been a while since I last did some writing, I’d love to say I’ve been really busy, but I haven’t. Before I get into this entry (and I’ll talk it about it more later on) my friends and family are fund raising for The Brain Tumour Charity and as I usually get about 500 readers I’m going to ask for a minimum £2 donation for reading this which should help us get an extra £1,000 for the charity….quick maths. (Link at end of blog)
Okay big spender, you’re still reading on. So, the last 8 weeks or so has been a bit of a rollercoaster, it’s involved some major golf milestones and cancer gradings. We’ll start with the shit bits, so I mentioned in the last post I was told the cancer was incurable and a grade 3. A little bit more information came out after, the specific cancer I have is called Anaplastic Astrocytoma (AA3), which is one of the nastier ones, although none of the ‘types’ seem too glamorous. I’ve included a link to some information about it, but it’s basically a fast growing tumour that has a high chance of recurrence after treatment. The prognosis isn’t very clear, this website says 27% of people live beyond 5 years. It’s not all doom and gloom there though, my consultant did say I have a ‘good prognosis tumour’ which she later clarified as meaning my specific gene should respond well to treatment. Also, some people I’ve seen from facebook groups live for 20-30 years after diagnosis and since I’m young, sexy and healthy I believe I’ll have a good shot at the 30 year mark.
I started my 30 sessions of Radiotherapy and to be honest, I didn’t know a great deal what I was getting into. I’d already had my mask fitted so knew the area I needed to go to but didn’t know much beyond that all I’d seen was information on Facebook groups of mostly 50-70 year olds absolutely smashing it and I thought, this will be an absolute breeze. I was wrong.
I’m going to first describe as eloquently as possible what Radiotherapy is and what it feels like. Radiotherapy is the use of radiation to kill cancer cells, as it’s cancer in the brain I can only have the treatment once as it also harms other healthy cells and causes long term side effects.
How it worked for me, each day I was taken in by helpful friends and family, thank you Sarah, Mum, Dad, Jimmy, Katie, Dave and Dave who took me to hospital every week day for nearly 2 months and sat in a multistorey car park, reading books, it was a big help! I checked in and went to my waiting room. I waited anywhere between 5 minutes and 2 hours (this was an anomaly; average time was about 45 mins) before my zapping. When I went in, I laid on a bed with my legs slightly elevated and they put my mask on. The mask didn’t feel claustrophobic for me it felt like someone was lightly pressing down on my face to keep my head down. The team levelled my table saying things like Imp 1 and stuff I didn’t understand. They left the room 7 mins later they were done. The only sensation I had during the radiotherapy was a smell of burning for a few seconds which when I asked was due to the radiation waves breaking down the ozone layer and I could smell the O-zone layer burning. But that was it really, it was an easy and simple process.
As I mentioned before if these 50-70 year olds on Facebook are saying it’s easy, this was going to be a breeze for a young whippersnapper like me. After around 6 cycles of radiation, in week 2 I felt exhausted, lots of headaches, getting my seizure sensations again, the closest thing I can liken it to is sunstroke, but, all the time. To be honest, this made me feel very low in mood, I would say around week 2/3 I was close to depression levels. I was frustrated that these old timers were smashing out their therapy like a game of backgammon and I was suffering, constantly with the thought that because I was struggling I wasn’t going to be part of the 27% who get past 5 years….it was a pretty shit state to be in. Then I started to think that because we started in very different places maybe the changes they have had aren’t as drastic as mine. These fogies might not have been able to walk down their stairs before cancer so sitting in bed tired is just the norm, whereas, if you take superman’s powers away and leave him exhausted with headaches and seizure feelings it’s probably going to knock him down a bit.
Anyway, I sought help as it’s the best way you can help yourself. I spoke to McMillian Cancer Support who agreed with my Oldies vs Superman paradigm but made some good suggestions which if you’re feeling the same as me may help.
- Find some hobbies you can still do; for me this was golf and cooking. Golf is the cure.
- Plan your days so you’re active
- I also started the fundraising for The Brain Tumour Charity (remember you’ve got to donate for reading this, it takes 2 seconds)
So, Eat, Sleep, Golf, Radio, Repeat for 6 weeks.
On the final week, I started to get excited, 2 sessions left….I get a text…..one of my friends has Covid and I saw him at a wedding a few days ago…..for fuck sake Tom. I told the radiotherapy department, I could still go in, but at 5pm and had to be escorted through the hospital. If you’ve ever seen E.T, I imagined I was going to be like him in hospital (Video of ET in Hospital). The reality was I was met by a guy at the front of the hospital who opened doors for me so I didn’t touch anything and the closed off on of the radiotherapy areas for me and I went in as normal.
I didn’t get COVID in the end, so the drama was all for nothing. I had my end of treatment call and they advised me that the worst symptoms can come after therapy has finished. Again, nah not me, I’ve already felt shit that’s for the oldies….but again Timmy put me back in my place. I felt like my head was swelling and the seizure sensations were back.
Since surgery I’ve had 3 seizures (focal aware, which aren’t nice but I’m still conscious and aware of surroundings) which in comparison to before surgery I was having them nearly daily is a big step in the right direction.
I’m currently waiting for next steps to see my Oncology Consultant next week and to start chemo in the next month or so (I think) but before I leave you here’s another snippet. One of things I don’t like to hear from people is “you’ve just got to stay positive”….(sorry if you’ve said it to me) but I just think, fuck off, you’ve no idea. However, after I spoke to my new best friend Dom Matteo (Hi Dom) he did instil some positivity into me and it did change my perspective. He makes 10-20-30 year goal and plans which is a great idea and allows you to start thinking long term rather than just chemo next, then scan, then scan etc. Don’t get me wrong, I find it hard to be positive 100% of the time, and that’s normal, I’m a realist at the end of the day but I’ve still started to make long term plans and goals which I intend to see through.
Finally, I hope you’ve enjoyed the post, you owe our fundraising a minimum of £2, sorry if you’ve already donated before but it means you too. So you know what you’re giving for, you can click to the link https://www.justgiving.com/fundraising/11k411k , but to really make it simple, my friends and family are running 11,000kms over a year for the 11,000 people who are diagnosed with brain tumours every year in the UK. All proceedings go to the Brain Tumour Charity, so far we’ve run about 1,800kms and raised nearly £5,500 which is amazing. If you all do you’re bit and donate now that could get us past the £6k mark really quickly, so thank you…..here’s the link again DONATE NOW